Supporting the Donation of Data for Medical Research

The annotation of thebiological samples with quality-controlled data about the donor significantly increases the usefulness of biological material collected in biobanks for medical research. Combining the donation of biological material with the donation of personal data is a strong desideratum. The difficulties in gathering these data lies in the heterogeneity or health care data and in particular in its distribution over many health care providers. We elaborate an architecture of an infrastructure, which allows individuals to share their health care data with biobanks to foster medical research and discuss the requirements and the technical and organizational challenges for such an infrastructure.